For many years, I worked as a Program Coordinator and Family Caregiving Consultant at the Alzheimer's Association and Del Mar Caregiver Resource Center. During that time I wrote a monthly newsletter for families taking care of loved ones with progressive incurable memory loss and dementia. Those articles are now a book, and this blog was created to share it (and any new articles I write) with all of you.

Sunday, February 28, 2010

In April, Maya Angelou was interviewed by Oprah on her 70+ birthday. Oprah asked her what she thought of growing older. And, there on television, she said it was 'exciting...'

Regarding body changes, she said there were many, occurring every day.....like her breasts. They seem to be in a race to see which will reach her waist, first. The audience laughed so hard they cried. She is such a simple and honest woman, with so much wisdom in her words!

Maya Angelou said this:

'I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow.'

'I've learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights.'

'I've learned that regardless of your relationship with your parents, you'll miss them when they're gone from your life.'

'I've learned that making a 'living' is not the same thing as making a life.'

'I've learned that life sometimes gives you a second chance.'

'I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw some things back...'

'I've learned that whenever I decide something with an open heart, I usually make the right decision.'

'I've learned that even when I have pains, I don't have to be one.'

'I've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back...'

'I've learned that I still have a lot to learn...'

'I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.'

Monday, February 22, 2010

Working for the Alzheimer's Association and then for Del Mar Caregiver Resource Center taught me one thing. If the people harmed most by our inadequate approach to health and long term care in this country don't stand up for themselves there isn't a chance in hell that anything is going to be done about it. We have a chance to create real healthcare reform in this country right now and the choices we make or don't make today are sure to affect future generations for a long time to come.

Unfortunately, as much as I think it would be preferable to have a bipartisan approach to creating real healthcare reform, the current Congress has proven that that's not something they're capable of doing. As soon as the public option was taken off the table I, along with MOST Americans, gave up. You don't negotiate with terrorists! And that's what the nay-saying Republican stonewalling has become. I say let's stop it now!

CREDO is circulating this petition to get the public option passed without Republican approval. If you agree that it really IS time for a change let's send that message to Congress and the president we elected to pass that change together. Without our action nothing can and will be done. President Obama and most of Congress have already given up on the ability to pass a public option but momentum is building to shift that perception. 119 House Democrats and 20 Senators have already been convinced through earlier CREDO petitions to push a public option through over Republican heads. With enough public outcry the rest of the Senate and House may come on board. They'll have no choice if they want to be re-elected in November.

Saturday, February 20, 2010

There is a spectrum of behaviors that family members report when it comes to dementia. There's the genetic variant of Alzheimer's that hits relatively early in life and doesn't leave anyone unscathed. The most intelligent competent person in their forties can become completely dysfunctional in a very short few years. That's the worst case scenario and it is NOT the one most people came to me about when I worked for the Alzheimer's Association and Del Mar Caregiver Resource Center.

The more typical situation belonged to the people who became slowly more and more incapable of handling their daily lives, became increasingly more dependent on the people around them, and died usually from some other cause in their 70s or 80s. This is also the most difficult kind of dementia to diagnose and, frequently, no definitive diagnosis becomes available until the behaviors become so intolerable or frightening to someone else that there is no other recourse except to intervene.

People would come to me reporting all kinds of troubling behaviors before their loved one was willing to seek medical attention. "What does it mean when I see that my mother-in-law is letting the bills pile up?" "I went to visit my parents when I went on vacation and I could not believe the state of their refrigerator!" "My grandmother stays in her bathrobe all day and spends the day muttering to herself." "I popped in unexpectedly on my father the other day and found him sitting in his underwear in the dark! He said there was nothing the matter with what he was doing and to leave him alone. Is this the beginning of dementia? How do I know? What do I do?"

I'd do the best I could with the information I had but the truth is there are no hard and fast answers to these questions. And now that I live with some elderly people exhibiting a few of these behaviors themselves I know that my best thinking on the subject was probably wrong! Yikes!

Some people, all of us perhaps, lapse into lazy behaviors when no one is looking. At a certain age, you've probably heard people say, one of the perks is not caring what other people think. I think now that that combination, combined with a lack of desire to change things when family arrives, was behind most of the early behaviors worried family members used to report. That's not to say that these behaviors are not early indicators. They certainly are! But people with depression act the same way and elderly "eccentrics" who don't want to play social games anymore certainly do. Take these people to the doctor and you won't get a definitive diagnosis of any sort of dementia in the early stage. Unfortunately, study after study does tend to show that high levels of depression and social isolation are two of the key determining factors in whether a person develops the disease. And that's the reason I wanted to write about this today.

Can you help a loved one who is depressed, feels cast off by society, alone and scared? Can you help someone who refuses to accept help? Sometimes you can help bring a lonely loved one back into the fold. Sometimes you have to let go of the outcome, extend a helping hand where it is allowed, and hope that it makes the quality of their lives (and yours) better as far as you're allowed to go.